I’m ok but not really

July 15, 2022

Maybe it’s my imagination, but lately it seems that people are asking, “How are you?” more than usual. I’ve hated this question for decades. I feel stuck when people ask: do they really want to know? If so, how much should I share? This issue isn’t new to anyone with chronic illness. I’ve written about it before, as have a lot of other folks. But these days, I’m dealing with something else: normalizing my own not-okay-ness.

Let’s start with my real answer to “How are you?”, what I’d say if I were being honest with them and with myself, and then I’ll break things down.

I’m fine. Ok, I’m not really fine, but I’m fine enough, you know? I’m getting by. I’m surviving day-to-day and it’s good enough. I mean, sure, it’s not really good enough, but it’s as good enough as it can be right now, you know? It’s doable. I’m overwhelmed. I’m exhausted. I’m doing an elimination diet that is stressful and overwhelming. I’ve going to in-person occupational therapy twice a week which is a lot logistically, and that’s before you account for doing the exercises at home every day. It’s supposed to be twice a day but I. Just. Can’t. I’m still trying to do my physical therapy every day. I’m exhausted, did I mention that? I haven’t slept well these last few… days? weeks? And I’ve been having nightmares since the pandemic began, too. I’m anemic and my thyroid levels are off. Those two are probably related. I’ve waited months and I’m finally getting an iron infusion next week, since supplements don’t work (no, I don’t know why I can’t seem to absorb certain nutrients) and I’ve had bad experiences with the infusions in the past so I’m really nervous. The last two times I brought someone with me but with the pandemic, I can’t do that this time. I wish I could bring a dog to cuddle. Anyway, I’ll be glad to get that over-with, but it can take weeks, or even months, to feel the effects. Oh, and I got my period this week so I was extra emotional and I lost a lot of blood. I had to spend time washing blood out of clothes and going to the bathroom every hour or two to deal with it. I’m sure that’s not helping with the anemia, either. Did I mention the new pain I’m having? And the two new diagnoses I got this week? I might have forgotten that. And it’s summer and while for some reason I hoped it would be different this time, it’s not. The heat and humidity bring additional pain, and it sucks. And Covid cases are soaring and people still aren’t wearing masks which is so damn disrespectful. Plus several friends have told me big secrets recently and I really want to talk those things through with someone but I can’t because they’re not my secrets and eventually it’ll all come out but it could be a long time and meanwhile I keep worry about these people that I love so much. All I want to do is sit on my couch and read a good book, watch movies, and crochet. But I can’t. I have to do my occupational therapy and physical therapy and prepare meals and go to appointments and do housework and try to do at least a little bit of volunteer and paid work. But you know, I’m fine. Because I feel like I have to be. I’m getting by, one day at a time, and that’s enough, right?

That’s what I want to say. But I never do. Some people hear bits and pieces. I’ll tell a friend that my heavy period is probably making my anemia worse and is probably why I’m extra fatigued this week. Several folks know about the stress around the elimination diet. A few know about this and others know about that and some don’t know anything because I just don’t even want to deal with answering a bunch of follow-up questions. And through it all, when a good friend who also has chronic illness asked this week how I was doing, my answer was still to say that I was fine. Sure, this was partly because I just didn’t want to talk about all of the crap I’m dealing with. It was partly because I didn’t want to bother her with everything. But it was also partly because I truly believed for a moment that I was fine, or at least fine enough.

Even I can tell that I’m really not fine. Come on, look at that answer above. That is not a “fine” answer. But I’m continuing to live my life, and it’s giving me the illusion that I’m ok. I’m so tired that I’m not processing my feelings, I’m just pushing them aside. It’s the exact opposite of what I’ve been learning in therapy but at the same time, even my therapist agrees that sometimes I need to compartmentalize. Sometimes it’s helpful for self-preservation.

And maybe that’s what believing I’m “fine” is all about right now: self-preservation. Because if I think too much about the many ways that I am so obviously not at all “fine” then I may loose my shit. And frankly, I’m too tired to have the really good crying session that I probably need right now.

I think that sometimes we need to give ourselves the illusion that we’re doing okay as a way of surviving it all. I feel like it’s ok to do this, as long as it doesn’t last too long, and as long as I recognize what it is that I’m doing. At first I really believed I was ok. Now I see it for the facade it always was, but I’m still using it, holding up the shield of fine-ness while knowing the shield is fake. Eventually everything will break through (probably at my therapy session next week, the first in several weeks due to my therapist’s vacation) and then I can hopefully go back to seeing the truth. But until then, I’ll keep hiding behind my fake shield, because at least it’s helping me to get through each day.

Does anyone else do this? Do you ever truly believe you’re fine, even for a minute, when it’s obvious that you’re really not? Does it help? I’m curious to hear others’ perspectives and experiences.

2 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants | Permalink
Posted by chronicrants

Choosing an arm: a simple decision?

October 16, 2021

“Which arm do you want for your flu shot?” It’s such an easy question, right? Well, not really.

In the car on the way to the pharmacy, I debated. I usually have a sore arm for a bit. (For context, I have chronic pain in many areas of my body, and my right wrist is one of the worst spots.) My left arm is stronger and has less pain, which means I can tolerate it there more, so I should get it in my left arm. Then again, maybe I should get the shot in my weaker arm, so I still have one strong-ish arm. So I should get it in my right arm. The soreness can mess up my sleep for a night or two. I sleep on my left, so I should get the shot in my right arm. But do I really want more pain in my right arm? No I don’t, so I should get it in my left arm. I reach for things with my left (I’m right-handed, but with extra pain that wrist, I have to do more with my left) so I should get it in my right arm. I use my left more when I drive, so I should get it in my right arm. But I want to have at least some function in my right when I drive, so I should get it in my left arm.

I went back and forth for a bit. Finally, I decided: the left. The deciding factor was simple: I can push through the arm soreness in my left to crochet and knit, two of my favorite hobbies which I do to relax. I can not necessarily push through the soreness to do those things if it’s in my right arm. And if I’m feeling lousy, which I have been lately (that’s a story for a different day) then I’ll want to do my yarn crafts more than ever.

These are the kinds of issues that I don’t think “healthy” people deal with. They simply pick an arm, probably their non-dominant one, and move on with their day. But for someone like me, whose non-dominant arm is needed to compensate for the pain and weakness in what is my naturally dominant arm, there’s no easy answer.

If you’re struggling with similar issues, related to your flu shot or anything else, please know that you’re not alone. Sometimes these supposedly-easy decisions are actually very difficult.

P.S. I’m happy to say that the soreness was much milder this year, and only disrupted my sleep for one night.

P.P.S. My brain fog is much worse than usual this week. I hope this post makes sense and that I caught the worst of the typos but, well, it is what it is.

1 Comment | Decisions, Frustration, Healthcare, Pain, Rants | Permalink
Posted by chronicrants

Symptoms, spreadsheets, and connecting dots

December 30, 2020

When did I start feeling crappy? Was it two days ago? Last week? When’s the last time I was glutened? When did I last need to use a cane or crutches to get around my apartment? When did I adjust that medication? These things would be hard enough to remember under the best of circumstances, but add in brain fog and days on end without with the structure of a full time job and suddenly it feels impossible to remember with any accuracy. Thankfully, I have my spreadsheet.

It feels like I started the spreadsheet recently, but actually it was September 2013. (Wow, 7 years already!) I had been researching how to treat my various health conditions, and tracking symptoms and medications was recommended so strongly in multiple books that I finally gave in and did it. There are many apps that can be used, but I like my spreadsheet. Everything is in there, I don’t have to worry about an app being discontinued, it’s easy to search for any words or phrases I want, and I can use my laptop’s keyboard to type everything out (that’s much easier for me than tapping on a phone.) When I have random thoughts about things I want to add to the spreadsheet, I record them in the to-do list app on my phone, then later put them in the spreadsheet. Every morning I check my email and look at Facebook. While I’m at my computer, I update the spreadsheet. Easy. Occasionally I’ll pop in some information later in the day, too.

I started with a lot of categories which, to be honest, I never consistently used. There are some blank days, too. Interestingly, as of now (December 2020) there hasn’t been a blank day since March 2019. During the pandemic it’s easier to stay on top of this, but clearly my tracking improved long before that. Still, while blank days are less helpful, I try to remember that making notes sometimes is much better than making notes never.

So what do I record? As much as I can, here’s what I like to track:

  • The length of time I use my ASV machine each night. (An ASV is a form of CPAP machine, used to treat my sleep apnea.) Every morning when I wake up, the machine tells me how long it’s been on. This is also a fairly accurate record of how long I slept.
  • Any delays to taking my medication on a given day. Maybe I forgot. Maybe I ate a meal late and so I had to alter when I took a medication. This doesn’t usually matter, but sometimes I feel off and it helps to be able to look back and see if this was the reason. I’ll also note if I took it early for any reason, but this is rare.
  • My period, and how heavy it is that day. (I also note this in my calendar, for easy access during medical appointments.)
  • Any changes to medications or supplements. I note names of medications and supplements, doses, and times of day that I take them.
  • Any unusual symptoms, or changes in the degree of my symptoms. I’ll note if my right knee hurts one day, and what makes it worse. I’ll note if my fatigue suddenly hits me hard. I always note gastrointestinal symptoms.
  • Any other changes that I want to track. For example, I use a blue light every morning. These are commonly used to treat seasonal affective disorder (and it’s definitely helped mine!) but I use it primarily to adjust my sleep cycle. At my last appointment with my sleep specialist, I mentioned my recent difficulty going to bed at a reasonable hour each night. He suggested that I adjust when I use my blue light in the mornings, moving it earlier by a few minutes each day until I reach the target time. This is a huge struggle for me, as it means I need to get out of bed earlier. That’s not something I’m good at. So now I am writing down what time I use the blue each morning to be sure that I’m more or less on track. It’s taking me ages to move the light, but I look at my notes each morning to get encouragement that I’m moving in the right direction. I can also use it to see if the change in time (and hence a change in my sleep schedule) is impacting how I feel in other ways. Once I reach my goal, I will stop tracking this, but those notes will remain in the spreadsheet for those days. There are many things I track temporarily like this.
  • Unusual activities and overall symptoms levels. I’ll note if today felt like an especially productive day, if I was out at friend’s house all day without getting tired (pre-pandemic, of course), if I took an unusually long walk and how it made me feel, if a short walk made me tired or caused pain, if I stayed up too late the night before and how I feel as a result. I will also note outside factors, like if it’s a dark and dreary day, I will note that because it impacts my energy levels (remember the seasonal affective disorder I mentioned before? Yeah, weather is a big one) or if it’s hot out and I had to spend time outdoors then I’ll note it because that increases my inflammation levels.

As you can see, there are certain things that I track regularly, and others that I track temporarily. Some things are obvious (a change in medication) and some less so (the weather.) The key is, over time I have been figuring out what tends to impact my health and those are the things I note. This has been incredibly helpful.

Recently I was fatigued. It hit me suddenly, which was odd, but I figured maybe I’d been doing too much. I blamed my adrenal insufficiency, which was a reasonable assumption. After a few days I knew that wasn’t the issue, but didn’t know what was happening. Eventually I realized I’d been glutened. My symptom tracking showed me that the gluten explained my previously unexplainable knee swelling and the intense brain fog.

And then there was the time that I suddenly realized that I was having less brain fog. My thinking had been clearer for several days than it had been in a long time. I looked at my symptom tracking and noticed that, based on the timing, this was probably due to stopping some supplements. I had stopped taking those vitamins because they contained corn derivatives in the fillers, and I had recently decided to get more aggressive about cutting corn out of my diet, since I knew I reacted badly to it in larger quantities. It had been immediately obvious that cutting out those smaller bits of corn was helping my digestive issues, but it was only thanks to my tracking that I realized its impact on my cognition.

I could give you dozens of examples of my symptom tracking spreadsheet helping me over the years. It’s not perfect, but for me it works. Ideally I would like to track a lot more information, but I have found that when I try to do more, I get overwhelmed and end up doing nothing at all. Something is better than nothing, so for now, I will continue to do this.

This works well for me, but I know it’s not the right approach for everyone. Please share what works for you, too, because it may give others some useful ideas. Do you track your symptoms? If so, what do you track and what program do you use? What would you recommend to others? I hope that everyone who wants to track their symptoms can find an approach that works well for them.

Leave a Comment » | Fatigue, Healthcare, Medication, Pain, Raves, Symptoms | Permalink
Posted by chronicrants

What isolation is teaching me about my health

August 20, 2020

While a lot of folks are venturing out into the world again, I am mostly staying in my apartment. During the hot days of summer I generally stay indoors anyway, since the humidity and heat trigger my symptoms. This year, with no other indoor places as an alternative, I am at home. And I am surprised at the impact it is having (and not having) on my health.

It became clear over the years that too much activity would lead to more fatigue, more pain, more gastrointestinal symptoms, and more random symptoms, but I could never be sure what constituted “too much” activity. I knew that resting helped, but how much rest was needed? More than that, I never knew if an increase in symptoms was from “too much” activity or from something else.

Then there was the food angle. If I had diarrhea, for example, was it from something I ate, “too much” activity, the weather, or something else? Even if I ate my own food, when I was out of the house I would wonder if I could have gotten gluten cross-contamination somehow. What if I ate food made by someone else? Would that be safe?

With so many variables eliminated, it is fascinating to see what remains. Aside from a couple of carefully chosen convenience foods (mmm, gluten-free frozen pizza!) I have eaten an item made by someone else only once in the past 5+ months: a birthday cake. My mother made it, and I trust her to make sure it is gluten-free, corn-free, and free of any cross-contamination. I have not eaten at a restaurant or even gotten takeout. My avoidance of takeout is partly from Covid concerns, partly from convenience (there aren’t many places near me with food I can eat anyway), and largely because I am enjoying the safety of eating my own food. Yes, I’m tired of constantly cooking and constantly washing dishes, but I love the confidence that my food is safe.

Of course, it’s not all easy peasy. Twice I was about to eat frozen vegetables when I realized they weren’t my usual brand (the downside of having someone else do my grocery shopping.) I checked the bag and each time, there was a risk of cross-contamination. Yikes! I am so thankful that I caught them both in time.

For the most part I have felt pretty good. That tells me a lot about the impact of activity level on my health. I was especially aware of this through mid-June. I had almost no pain aside from the predictable pain that came from not attending physical therapy. Then the weather shifted. I am so incredibly thankful to live in an apartment with central air conditioning. None of my previous apartments had it, and when I moved several years ago, I made it a priority. I am especially grateful for that now that I am in isolation. In previous summers, when my window units weren’t sufficient, I would sit at the library, exercise by walking around a craft store, or spend several days at my parents’ house, enjoying their company and their air conditioning. With none of those as acceptable options now, I am stuck at home. Still, even with the door closed and the air conditioning on, the weather seems to be impacting me. And when I do venture out to check the mail or take a short walk, I feel it even more.

I am glad that, as I wrote last month, I am less heat intolerant now than I used to be. Still, “less than before” still doesn’t mean I can handle it well. For two weeks I barely left my apartment. It wasn’t good for me physically or emotionally, but the alternative seemed worse. Even while staying indoors I had increased fatigue (perhaps from the lack of outdoor movement? but probably not), increased joint pain (ditto? but probably not), increased inflammation, and increased gastrointestinal symptoms. The inflammation is bad. My knees are so swollen that my knee braces barely fit. My physical therapist (the one person I get within 10 feet of) put her hands on my neck and shoulders and instantly said that she felt the inflammation. This is not good.

Two weeks ago I received test results: I am hypothyroid. Again. I have had to adjust my medication many times over the years, sometimes in the summer and sometimes in the winter. However, this time I can rule out a lot of factors that could be impacting my thyroid. After all, not a lot else is going on!

Yesterday I felt lousy. I had diarrhea followed by fatigue. It was easy to cancel my “plans” for the rest of the day, which consisted of writing a blog post here, taking a walk, doing my physical therapy, and doing some organizing around the apartment. Instead, I watched tv and crocheted. It was relaxing and it helped. Normally I might have thought I had done “too much” that day, or wondered about something that I ate outside of my home. Instead, I could narrow the culprit down to two things: the weather and what I ate. I had eaten ice cream after lunch, which is usually fine, but I’ve had a lot of dairy lately and maybe it was just too much. And right before lunch I had felt hot on my way home from my walk. The humidity was bothering me, which is never a good sign. And then I ate immediately after I got home because I had a therapy appointment online that I needed to be ready for. Oops. I’m pretty sure those two things combined were the problem. It was good to at least have a reasonable guess as to the cause of the problem, and then to be able to easily rest afterwards.

The other day I met up with a friend. We took a walk, sat and chatted, walked some more, and went home. We kept our distance and wore masks. We were safe. But part way through the visit I felt ill, and I know 100% it was from the heat. On a cooler day I had met up with my parents. We didn’t walk as much and just sat. I felt fine afterwards, just tired. I’m not used to even small amounts of socializing any more. The difference was definitely the weather.

So what’s my point? My point is that I am getting a better understanding of how the many different variables of a “typical” day impact my life. I can figure out what makes me feel ill, and what doesn’t have an impact or even makes me feel better. The goal for me will be to use this information when, one day, I am able to go out and do things again. I will need to find a balance. Avoiding symptoms 100% is obviously not possible; if I can’t do it now, then I’ll probably never be able to do it. I also don’t want to cut off the rest of my life in order to sit at home and hide from my symptoms. Still, my hope is that I will get a better sense of where the balance lays, so that I will be able to focus more on the things that are worth the increased pain and other symptoms, and avoid the ones that aren’t.

I have also learned how big of a difference telehealth makes for me, and will advocate for its continuation. Several of my doctors have already said that they plan to continue with it, so I will need my insurance to cover it. Not having to drive for an hour to sit in a waiting room before finally seeing my doctor for a 15 minute conversation that involves no physical examination is waste of everyone’s resources, and I will be glad to see that end. I want to reserve my appointment-related energy for the appointments where attending in person actually matters.

With isolation far from over, I know that I will learn many more lessons. These are an excellent start, though, and I am glad that there will be at least one positive thing to come out of all of this for me.

What about you? How has your health been during isolation? Are you learning anything new or clarifying previous assumptions? Please share!

Leave a Comment » | Educating, Expectations, Fatigue, Isolation, Limitations, Milestones, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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